Self-care for people with heart failure: the importance of tele-nursing in the COVID-19 pandemic

Abstract Objective: to describe factors of influence of telenursing on naturalistic decision making about self-care of people with heart failure during COVID-19. Method: this is a descriptive study with a qualitative approach, with 16 participants interviewed after hospitalization for decompensated heart failure. The data was collected using audio and video technology and submitted to content analysis, guided by the Situation-Specific Theory of Heart Failure Self-Care. Result: two thematic categories emerged from the analysis: Self-care as a decision-making process and Factors influencing decision-making, which describe tele-nursing as a support resource for people with heart failure, during changes in care in the pandemic period. Conclusion: it was possible to understand the relationship between telenursing and the establishment of a bond, in order to stimulate naturalistic decision-making by people with heart failure in their daily lives in a coherent way, leading to better health outcomes.


Introduction
Of the various aspects in which we could analyze the context of the global health crisis, we have as an object of observation for this study people with heart failure (HF), given that they belong to the group of chronic diseases, considered conditions of greater vulnerability to the new type of Coronavirus, Severe Acute Respiratory Syndrome Coronavirus 2 -SARS-COV 2, which causes the disease COVID-19 as a result of acute respiratory syndrome (1) .
As a chronic disease, HF results from important physiological, structural and functional changes, associated with the presence of multimorbidities, high rates of rehospitalization (2) and the coexistence of multiple emotional symptoms that contribute significantly to cardiovascular decompensation events (3) .However, due to the COVID-19 pandemic, there has been a significant change in health care on a global scale, both at the outpatient and hospital level, causing a reduction in the monitoring of this population, and consequently, in the number of hospitalizations (4) .
In 2020, there were more than 114,000 hospitalizations for HF across the country, with 11,548 admissions (and readmissions) in the Midwest region, the site of this study (5) .A significant figure, however, with a 15% reduction in hospitalizations compared to the previous year (4) .This lack of follow-up can influence self-care, leading to cardiac decompensation (6) .
The Situation-Specific Theory of HF Self-Care provides nurses with the tools to provide nursing care based on encouraging important changes in lifestyle, the perception and monitoring of symptoms and the achievement of autonomy to carry out self-care through a naturalistic decision-making process (NDT) (7)(8)(9) .
People with chronic illnesses have significant demands during the course of the disease and need adjustments to their self-care routine (10) .The bond comprises the responsibility between the health team and the individual in promoting health and preventing illness through effective communication, building trust and affective relationships (11) .When this link is maintained, for example, with telemonitoring, it reinforces the potential of this technological tool to provide care at a distance, facilitate access to health professionals, promote clinical practice, individualized care, clarification of doubts, fears and anxieties, favoring knowledge of the different realities of the people assisted (12)(13) .
We consider it important to address the topic, because in addition to the particularities involved in coping with the pandemic during the period of social restrictions, there are important gaps in the literature on the self-care of people with HF based on theories of practice that address limitations and barriers encountered in experiencing the disease.Through the experiences reported after hospitalization, the research sought to describe the influencing factors of telenursing in naturalistic decisionmaking for self-care of people with HF during COVID-19.

Study design
Qualitative study (14) , based on the situation-specific theory of heart failure self-care, which proposes the influence of knowledge, experiences, skills and compatibility with values on the self-care of people with HF (7) .
The design and execution of the research was guided by the recommendations of the Consolidated Criteria for Reporting Qualitative Research (COREQ): a 32-item checklist for interviews and focus groups (15) , using a checklist provided by the EQUATOR network (https:// www.equator-network.org/).

Research scenario
The study was carried out with people linked to a public tertiary hospital institution of the Unified Health System (SUS), which provides outpatient and inpatient cardiology care, in a capital city in the central-western region of the country.The interviews took place after hospitalization as a result of decompensation of the disease, using telenursing consultation as a strategy (16)(17) .

Period
The interviews were conducted between November 2020 and January 2021.

Study participants and selection criteria
People aged 18 or over diagnosed with HF participated in the study, with the cause of hospitalization recorded in their medical records.Participants were selected from a variety of samples, defined by the criterion of fundamental homogeneity, whose key characteristic for the study was having at least one hospital readmission within six months, due to decompensation of HF (18) .The search for patients was carried out by listing the monthly admissions by specialty of care and reason for admission of all those who had been readmitted within six months of discharge.
Initially, 48 patients were selected, of whom 22 could not be contacted because their records were out Gondim MC, Silva RC, Silva AKB, Vieira FVM, Guimarães JV, Siqueira KM, et al.
of date.After an active search by telephone, 26 patients were contacted and nine patients were excluded: refusal to participate due to physical weakness (2), death (1), not meeting the eligibility criteria (1), no response to subsequent telephone contact (5).One patient was considered lost after the start of the interview due to a drop in the internet connection, without success in a new connection to continue the interview, even after three attempts, on alternate days.A total of 16 participants were included.
The exclusion criteria were people who had suffered a stroke with cognitive sequelae, pregnant women, patients with congenital HF, patients who had undergone major surgery three months before data collection, deafness and cognitive limitations that made communication difficult.

Data collection
Once the list of patients eligible for the study had been established, an invitation letter was sent via the WhatsApp ® instant messaging platform, reinforcing the purpose of the study, introducing the researcher and the reasons for carrying out the study.
Due to the social restrictions caused by the COVID-19 pandemic, all contact with the participants took place via the patient's or family member's own messaging app, and via telephone call.Data collection was carried out by a nurse researcher with training and experience in conducting qualitative studies, in a single moment, on a date and time indicated by the participant.It was made clear that the interview would be prioritized via video call, but due to the choice of some participants (N=6), the interview was conducted via audio call.
The reading of the informed consent form was recorded in full, as was the entire interview after acceptance, using a mobile device and available through the iOS operating system for iPhone ® .The interviews lasted an average of 34 minutes (18 minutes minimum and 60 minutes maximum).
The data collection instrument consisted of a semi-structured script that allowed participants to talk about their experience with the disease, the selfcare measures they adopted on a daily basis, their perceptions of symptoms and how to deal with signs of decompensation, as well as any information they might have received during hospitalization about self-care.
The 5 questions were designed in accordance with the theory underpinning the study (7)(8)(9)   After data collection, due to the pandemic period, which led to difficulties in accessing the health service, many doubts and questions were raised by the participants about appropriate conduct in managing the disease and issues inherent to the health service.Therefore, due to the ethical commitment of the researcher responsible for data collection, the requested information was provided at the end of the interview.

Data analysis
The content analysis technique was used, using the thematic modality (19) .The trail-based analytical procedure was anchored in the theoretical framework of the Situation-Specific Theory of Self-Care in Heart Failure (8) .Content analysis consists of a set of systematic techniques and procedures for understanding the content of interviews in order to infer relevant knowledge.Floating reading of the interview after transcription was followed by a thorough reading with the establishment of units of meaning, subcategories and, finally, the categories that represented the refinement of the results (19) .
The proposed thematic analysis was achieved through in-depth reading and, in order to guarantee the principle of plausibility of the data collected and the interpretation of the research results, the analysis was carried out by two researchers and the ways of identifying the categories were discussed, seeking consensus on the themes identified (18) .
In order to systematize the analysis process and manage the textual material, the data was processed using ATLAS.ti® software version 9.0.Speeches transcribed in a Microsoft Word document were sent to the software for the creation of units of meaning or codes, which were found in significant numbers (N=370).This technological resource promoted greater scientific rigor in grouping the codes to form subcategories, from which the following themes emerged.
During this process, the subcategories and themes were analyzed in the light of the Situation-Specific Theory of HF Self-Care, in order to identify whether they represented the dimensions described in the autonomous and consultative elements of the theory.
The participants were identified with the code P followed by the number assigned to them in the order of the interview (P1, P2, P3, (...), P16).

Ethical aspects
The study followed the ethical precepts of research After the interviews, in accordance with the ethical commitment of the research, the participants were sent an information leaflet prepared by the researchers on selfcare for HF, based on the stages of the situation-specific theory of self-care for HF and the assumptions of the middle-range theory of chronic diseases (7)(8)(9)20) .

Results
According to the characterization of the study participants (N=16), the majority were male (N=13), aged between 37 and 85, especially over 65 (N=9), married (N=10), with a diagnosis time of more than 5 years (N=12).The classification of HF was collected from the medical records.The hemodynamic clinical profile was predominant, with a prevalence of Profile B (N=10).
The profile of the participants reflected high cardiac involvement, with obvious symptoms and signs of edema and congestion, as well as associated comorbidities such as arterial hypertension, renal alteration and/or diabetes.
Considering that the inclusion criterion for the study was to have undergone more than one hospitalization, a considerable number of re-hospitalizations were observed in the period analyzed.Self-reported hospitalizations ranged from two to eight, with eight participants reporting three hospitalizations during the year and five having undergone more than four hospitalizations within a six-month interval.
It was clear from the reports that the hospital is indeed the reference for treating the disease.However, the changes in care due to the pandemic and the consequences suffered by this population are reflected in the barriers imposed by the health service.
In-depth reading and analysis of the material derived from the interviews generated two thematic categories that are close to the naturalistic decision-making process (NDM) for carrying out self-care (7)(8)(9) , highlighting the barriers and limitations identified in the statements, as shown in Figure 1.
Figure 2 shows the categories and aspects of analysis.

Aspects of analysis
Self-care as a decisionmaking process The participants showed low levels of knowledge and skills and little learning from previous experiences to make selfcare decisions.They expressed a need for more support for coherent attitudes and establishing a bond with the health professional.

Factors that influence decision-making
Participants' self-care is influenced by personal factors, such as socio-economic and cultural conditions, fatalistic beliefs and others; problem factors such as the presence of comorbidities; and environmental factors, which are the support of family members and professionals to carry out self-care in their home environment.

Self-care as a decision-making process
This category includes the aspects that influence participants' daily self-care decisions: knowledge, experience, skills and values (7)(8)(9) .All of these aspects

Factors that influence decision-making
The speech strata of the Factors influencing decisionmaking category represent the factors highlighted in the situation-specific theory of HF self-care (8) :

[...] I get sick at night sometimes, I call him (the doctor),
or my wife, and he gives me advice.He's an angel of God to me

[...] I also have a lot of faith in home remedies (P12).
There

Discussion
It is clear from the participants' speeches that there is little outpatient care, especially in more complex situations.The testimonies point mainly to the abandonment of physical activities, carried out at the institution's physiotherapy outpatient clinic and/or spontaneously in public leisure areas, difficulties in receiving care due to crowded emergency units, delays in post-discharge return appointments and in the cardiology outpatient clinic.
When questioned, most of the participants had no contact with health professionals to answer questions Rev. Latino-Am.Enfermagem 2024;32:e4227.
and provide guidance on day-to-day conduct, nor had they received guidance on how to take better care of themselves during hospitalization.When guidance was given, it was more related to the routine of the nutrition service offered to all patients, without individualizing their needs.However, through reports of gratitude for the care received and the relationship with the healthcare team, the presence of the medical professional was emphasized, with the nurse, as well as other professionals from the multi-professional team, being barely mentioned in the speeches.
A multicenter study tested HF management programs in public and private institutions in Brazil and warned about the gap in patient and caregiver education, and the underuse of patient monitoring (home visits and/or telemonitoring) in both types of services (21) .The low effectiveness of the information provided to reduce negative results in the treatment of HF was related to both pharmacological and non-pharmacological treatment.
There are also gaps in knowledge about the pathology, the disease process, as well as important non-pharmacological measures for adopting self-care behaviors that promote a better quality of life.Where they did exist, there were incipient reports of attempts at self-care attitudes such as sodium control, reducing fluid intake, frequent physical activity and monitoring symptoms of decompensation.Pharmacological treatment was the most commonly mentioned, but adherence was poor.

Many participants reported doubts about adjustments
to their diet and medication and the search for answers about their clinical condition to allay fears and concerns.
Others expressed doubts about bureaucratic procedures at the hospital of reference, showing a desire for a greater bond with the professionals.
In the presence of chronic illnesses, self-care is essential for maintaining health, requiring a set of behaviors that lead to health promotion and disease management (20) .HF guidelines emphasize the importance of education in patient adherence to treatment, lifestyle changes, monitoring symptoms and responding appropriately to possible signs of disease decompensation (2,22) .
The situation-specific theory of HF self-care defines self-care as a naturalistic decision-making process, divided into linear stages to be completed by the person with HF: 1) Maintenance of self-care, which involves lifestyle adjustments, 2) Symptom perception, including monitoring and the body reading process, and 3) Self-care management, with the acquisition of skills and the adoption of behaviors in the event of alterations (7)(8)(9) .
Each stage involves consultative elements, where the person receives help and support on what to do and develops autonomy from acquiring the knowledge and confidence to look after themselves (7)(8)(9) .In the light of the situation-specific theory of HF self-care, people make decisions automatically, incompletely, contextually and rarely following a model.
However, it can be influenced by various factors, such as: emotional support, support received, experience, knowledge, cultural, values and others (9) .
The important role of the informal caregiver should also be considered, as well as professional support that enables continuity of care and avoids re-hospitalizations as the only way to solve the problem (23)(24)(25)(26) .
Since the COVID-19 pandemic, nursing teleconsultation has been regulated by COFEN Resolution No. 634/2020, which "authorizes and regulates nursing teleconsultation through consultations, clarifications, referrals and guidance using technological means" (27) .Therefore, nurses must use their knowledge, skills and other available resources to provide people with more comprehensive and effective care (28)(29) .
Self-care involves multiple factors that are susceptible to intervention.It is a process subject to influences that can favor better choices and result in better outcomes (30) .
Since the 1980s, research into naturalistic decision-making has sought answers to how people make decisions in the real world (31) .
The limited number of reports in our study about information received during hospitalization and the lack of knowledge about the factors that influence the decompensation of the disease hinder the process of selfcare and decision-making.The participants did not show that they were prepared to make the necessary decisions in situations of decompensation.
According to the NDM theory, people make choices based on rational and/or intuitive components, and when they make their choices, they rarely do so in an analytical and systematic way.In other words, people make decisions for various reasons, but there is a consensus that their experiences trigger quick choices in critical situations so that they commit to a course of action, without necessarily comparing the other existing alternatives (31)(32) .
In many of the interviews, they vented their experiences of receiving the diagnosis, mentioning personal values, the impact of lifestyle changes, the lack of motivation to take care of themselves, reports of traumatic situations that influence adherence to treatment and the acquisition of autonomy to manage self-care.This is evidence of the participants' need to be heard in their anguish and anxieties.
The participants in the study seem to have insufficient knowledge, even with considerable time since Gondim MC, Silva RC, Silva AKB, Vieira FVM, Guimarães JV, Siqueira KM, et al.
their diagnosis; when they do have it, few report the confidence to adopt coherent attitudes.An example of this is the lack of autonomy to take extra diuretics in the presence of edema.
According to concepts described in the middle-range theory of self-care for chronic diseases, motivation can be intrinsic or extrinsic, with the former arising from the desire to learn and perform tasks that generate pleasure or satisfaction, and the extrinsic arising from understanding the need to improve health, or even aiming to please other people, such as family members (20) .
Many self-care behaviors that arise from extrinsic motivation evolve into intrinsic motivation, shaping a lifestyle that is pleasurable for the person and with greater chances of success (20) .This explanation is related to the understanding of decision-making based on combinations of learned patterns, a purely intuitive factor.If the person makes a clear correspondence between their choices and the results obtained, they will be able to take actions that are more coherent with their health condition and needs and involve more assertive choices based on reasoning in the face of different existing situations (31,33) .
Cultural beliefs and values were also very evident, such as the high level of dependence on the spouse, religious influences, popular beliefs in home remedies and other behaviors that can be worrying, contradicting recommendations based on scientific evidence.
Due to the lack of follow-up, the emotional overload of the participants in this study was evident.The explicit or hidden needs in many moments of speech reflect the need to have someone who was really interested in listening to their testimonies, life and daily stories, frustrations, difficulties, anxieties, desires, or even someone who could provide psychological support in coping with the disease.
Psychological conditions can contribute more negatively to the worsening of the disease than physiological causes, due to the impact on people's lives, the lack of follow-up and/or inadequate symptom management (34) .
In this sense, the researcher occupies an important place in human relationships of subjective understanding of the other person's experience, regardless of whether the information makes sense to the researcher themselves (35) .In qualitative research, the participant and the researcher are interconnected parties in the investigation, where understanding the phenomenon depends on an empathetic, sensitive and unique movement (14) .The meanings of conversations depend on the context in which they occur (15) .
We attribute the depth of the themes that emerged during the interview to the qualitative approach which, although an interview script with semi-structured questions was used, allowed for this moment of empathy with the researcher, therapeutic listening and a favorable environment for the participants to expose their reality and feelings.
This therapeutic listening is understood as an essential strategy for understanding the other, capable of defining an order of priority for assistance based on the individual needs expressed by people and capable of sending health professionals on ways to improve people's decision-making performance (31,36) .
A phenomenological study on social distancing during the pandemic highlights that the impossibility of interacting in person has had a profound impact on social relationships (37) , while "interaction with another person can nurture a sense of comfort and hope or, on the contrary, a sense of discomfort and vulnerability" (37) .
It is necessary to consider the context of interpersonal interactions shared by the other person and the other person's existing "being in the world", in which we are invited to participate, and which makes the depth of interpretation and the helping process possible.
Still largely unknown, these virtual experiences must be analyzed to bring greater clarity to the dimensions of this new era, in the hope of getting positive responses to a new way of assisting others.
Our data also strengthens our understanding of the need for comprehensive interventions and nursing care that is more accessible to people in their home environment, where their greatest doubts and difficulties arise, their role in the family nucleus and their identity as a social being.
The confidence mentioned above, as a fundamental element for managing self-care, reflects people's self-efficacy, i.e. the ability to make coherent decisions even in the face of barriers and difficulties, and is not part of self-care itself, but is essential at all stages (7)(8)(9) .
The need for support and encouragement for the study participants is evident.
Analysis of the interviews leads us to realize that in the event of an unexpected event (extrinsic, such as the pandemic or another stressful situation in everyday life, or intrinsic, such as decompensation of HF and exacerbation of symptoms) it is important for the person to be able to carry out the decision-making process for self-care, in this sense telenursing can be a collaborative resource in the management of these events, in strengthening the bond previously established, or in the possibility of establishing this bond in the post-hospitalization period.To represent this interrelationship, a diagram was drawn up as shown in Figure 3.
Rev. Latino-Am.Enfermagem 2024;32:e4227.According to the National Primary Care Policy (PNAB), the bond "consists of building relationships of affection and trust between the user and the health worker, allowing for a deepening of the process of co-responsibility for health, built up over time, as well as carrying therapeutic potential" (p.21) (38) .
Through telenursing, the establishment of a bond can begin with the acquisition of information that enables interventions even at a distance, lifestyle guidelines, and clarification of doubts to prevent early readmission (39) .
A study carried out by nurses trained in tele-coaching in Germany during the COVID-19 pandemic, who assisted people with HF in the post-discharge period, showed that the group accompanied by telemonitoring recognized the symptoms of decompensation of the disease and learned about the time to seek medical assistance, avoiding situations of greater severity (40) .
Similarly, in our study, telenursing represented an important tool in this context of global health crisis by promoting empathy, respect, active listening, and individualized, comprehensive therapeutic care for patients with HF.
The study contributes to the advancement of science by demonstrating that the use of tele-nursing can overcome important barriers imposed between people with HF and health services.However, the use of theories of practice can instrumentalize and direct the assistance of nurses and other members of the healthcare team in clarifying doubts and supporting the achievement of the stages of self-care.More qualitative studies are needed to provide new evidence of these relationships.
The limitations of this study were the diversity of the participants' sociodemographic and clinical factors and the difficulties some participants had in using electronic communication resources, especially video media.

Conclusion
The study showed, in the light of the situation-specific theory of self-care for heart failure and the middle-range theory of self-care for chronic diseases, the existence of important gaps that compromise the decision-making of people with HF, which have a significant impact on the acquisition of skills for the proper management of self-care.
Considering the pandemic period, this population suffered the negative consequences of the lack of follow-up needed to manage the disease.In view of this, tele-nursing is an important resource for establishing a bond with the patient after a period of hospitalization.
The presence of the nurse was barely noticed in the reports, which is a warning that the lack of an active presence by the professional as an educator result in a lack of knowledge and understanding of these people in the context of health services.This perception was clear in the requests made by the study participants with the doubts presented and the appreciation of this moment of interview.
The need for continuity of care and the establishment of a support network for people after hospitalization was evident.The interview was an integral therapeutic moment in telenursing, given the barriers imposed by the COVID-19 pandemic.
It also highlighted the importance of emotional support for people with HF, combined with conventional treatment, to better cope with the disease.However, it is necessary to reflect on how effective monitoring is for this population in all contexts, even outside the pandemic period.

4 )
What do you think may have contributed to the occurrence of more than one hospitalization during this year?; 5) Do you have any examples of information you received on how to take better care of yourself and your illness during hospitalization?Sociodemographic and clinical data were collected from the medical records and checked with the participants at the start of the interview.
involving human beings, according to Resolution 466/2012 of the National Health Council, and was approved by the participating institution under opinion number 4.161.021,CAEE No. 10225519.8.0000.5078,version 3.

Figure 1 -
Figure 1 -Categories and subcategories of the qualitative interview of the study "Self-care of people with heart failure: the importance of telenursing in the COVID-19 pandemic".Brazil, 2023

Figure 2 -
Figure 2 -Aspects of analysis of the categories Self-care as a decision-making process and Factors influencing decision-making.Brazil, 2023

Figure 3 -
Figure 3 -Diagram representing the relationship between the bond with people with heart failure, the influence of telenursing and the naturalistic decision-making process for self-care in situations of unexpected events.Brazil, 2023